If there are Macmillan nurses for Cancer patients, why are there no Parkinsons nurses who can help in the same way?

I ask this question because I really don’t know the answer. I understand that if you have Cancer, there are trained nurses who can help and come into your home. If you have Advanced Parkinsons, why are there no Parkinsons nurses who can help in the same way? It is equally debilitating. Can anyone advise? Thank you


Hi HavanaS,

The following areas of our website may be of interest to you:

A list of useful contacts for those with Advanced Parkinson’s, including charities and other organisations specialising in Home Care: https://www.parkinsons.org.uk/information-and-support/advanced-parkinsons-useful-contacts

Details on which Health and Social Care professionals can help people with advanced Parkinson’s: https://www.parkinsons.org.uk/information-and-support/advanced-parkinsons-treatments-and-therapies

Information on Home Care and Care Homes: https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes

Information on NHS Continuing Healthcare: https://www.parkinsons.org.uk/information-and-support/nhs-continuing-healthcare

We hope this helps.

Best wishes,

Moderation Team

Have you not got a local Parkinsons Nurse? Ask your consultant or GP to get you the Telephone number. I was referred to mine this year after being diagnosed 6 years ago. She was brilliant and referred me on to a Parkinsons physio. Who visited me at home. To assess my needs. This led to hospital physio sessions. the service here in East Devon superb. It was only made available though when I asked.

Ok thanks. Good to know. Yes- my mum has a Parkinsons nurse. After 16 years, I think she is now at a bit of a loss with my mum as there is only so much tweaking you can do with medication.

My mum is in hospital after a broken knee and 6 weeks later is still there with hospital delirium/ delusions/ hallucinations. They said they need two carers, 4 times a day to bring her home even though my dad said one carer is ok and he will help.

So she is in a catch 22 where hospital is stressing her out/ making her worse/ chance of not getting her medication on time etc and not being able to get home because she is on a waiting list to get two carers…